Life after stroke: taking over my daughter's role in life

At 53, I became a surrogate mother to my daughter’s 2 children, a carer to someone with a severe disability, and a person who felt completely alone in the world. But, I soon realised, I wasn’t alone at all.

Note: Names in this article 'Life after Stroke' have been changed for privacy reasons.

The hardest thing has been realising that I have taken over my daughter’s role as a mother.

It’s not something that I ever wanted… but when life throws a curve ball, you just have to do what you can to survive.

My daughter Anne is a great mother. She loved taking the kids out exploring, out to the park, or she’d take them along the Yarra in a row boat. But everything changed overnight.

Her speech changed, her left side became very weak and distorted. She lost the ability to walk, and talk. They said she’d had a stroke, which left her with a brain injury.

Anne’s children were just 6 and 7 years old at the time, but she was no longer able to look after them so I was given full custody.

I adore my grandchildren, but I was terrified.

I’d drop the kids off at school, take public transport to the hospital, spend a couple of hours there with my daughter, take her dirty washing home on public transport, get back to the school just in time to pick the kids up, then it was time for dinner, homework, baths, more washing. I didn’t even understand the modern school system. I couldn’t answer their homework questions. So much had changed since I was at school.

I was trying to help the kids cope with what had happened to their mum, while trying to deal with my own emotions. My daughter had become incapacitated, and I’d become a mother again at 53. I was utterly exhausted.

I lost a lot of contact with my friends. They didn’t have young kids at home any more so they were in a different stage of their lives. I was lonely.

One of my saving graces was BrainLink, a group which works to improve the quality of life for people impacted by acquired brain injuries and disorders. One of the greatest things they’ve ever done for me was to take me away for a night. It gave me a chance to just breath. To be able to rest, and to connect with other carers was invaluable. The realisation that other people were out there going through the same thing was empowering.

There’s still a lot that’s unknown about what really happened to Anne.

Anne’s health challenges started with a drug overdose. I believe in my heart that she was poisoned. She’s the only one who can tell us, and she doesn’t remember. Straight afterwards, Anne was recovering in hospital and making great progress. We’d been told she would make a full recovery, and live a near-normal life. In our eyes, the worst was over.

But then all of a sudden, virtually overnight, she changed. I understand now, that’s when she had the stroke. My daughter couldn’t walk any more, feed herself, or take herself to the bathroom.

Months passed, and her condition deteriorated. After nine months in rehabilitation, she was transferred to a nursing home. No one should ever have to see their daughter in a nursing home. Society just wasn’t equipped to look after a young person with severe disability.

BrainLink helped me find new accommodation for her, and navigate the complex system for how to get support for someone with a disability. Not only was it confusing, it was also physically exhausting trying to work out how to get her from appointment to appointment.

While my daughter knows who she is, and remembers much of what happened before her brain injury, she still gets quite confused.

She can’t remember today or last week, but if you ask her questions going back prior to the brain injury, she can answer them all.

It was her birthday last week, and she didn’t realise how old she was. I explained to her what the date was, and together we did the maths. She said, “44? I’m 44?!” She couldn’t believe it.

I’m 70 now, and I’ve had the kids for 17 years.

I watch my two grandchildren finding their way in life as young adults. They’ve had their challenges, their ups and downs, but I’m proud of how far they’ve come and I know Anne would be too. She can’t show a lot of emotion, but if you look into her eyes, you can see that she’s missing them. Any time they go to visit her, she hugs them a lot. And I can see the sadness in her eyes whenever they leave.

Being a carer is hard work, and living with disability is even harder work… emotionally just as much as it is physically. But things are starting to change. Organisations like BrainLink and Bupa are helping to bring disability out into the open, and bring hope to people like me and my family.